Raising a heart child with hope and a silly sense of humor

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And he turned 10 a month ago! And I have not written a single word since January! Which is very sad. Especially considering what a momentous occasion it was to celebrate an entire decade of Corey’s life. The child who has half a heart, who the perinatologist said would not reach his first birthday, has now blasted past 10 birthdays with his hair on fire. That child has more energy than an atomic bomb. He wakes up in the morning, his brain is instantly buzzing, and he is in action from that moment until the moment when his head hits the pillow at night. He gets As and Bs in school, he plays the violin, he is a reporter for his school newspaper, and he plays baseball. And he loves building Legos (like the Leaning Tower of Piza, above), solving Rubik’s cubes, and learning magic tricks.

He is a little miracle.

So why haven’t I written about this little miracle in so long? I blame the two-year-olds. You’re thinking, “Uh, what?” I’m teaching preschool. There are 30 two-year-olds in my life now. And they are wonderful, adorable, laugh-out-loud funny little beings who suck my energy out like a Hoover on steroids. I do love them, though. They just don’t leave much left in my tank for things like blogging.

Anyway, we did celebrate Corey’s big day like he was a rock star. We didn’t have one party. We had two parties. One was an evening event for adults and family members, and the other was an afternoon event at Corey’s favorite arcade – Crabtowne. The first event went off without a hitch. The second event, not so much. It snowed, which turns everybody here in Maryland into giant snow weenies (present company included), and nobody wants to drive anywhere. But! Of the four boys Corey invited to play pinball and old-fashioned Pac-Man, three of them braved the snow, accepted a roll of quarters from us, and played their hearts out for about two hours. In the end, Corey was happy. Other than that, who cares?

I wrote a book titled Raising a Heart Child: A Parent’s Guide to Congenital Heart Defects. It is based on Corey’s journey through the world of CHD. It is available in ebook format on Amazon, Barnes & Noble, Apple, FlipKart, and Smashwords, and it will soon be sold on Oyster, Kobo, Blio, and PageFoundry. Here is the introduction:

We began our journey in the world of congenital heart defects (CHD) when I was twenty weeks pregnant with our first son, Corey. During the standard twenty-week ultrasound, the technician found that one side of our son’s heart was abnormally large.

And so it began. A series of high level ultrasounds, test after test, consultation after consultation with specialist after specialist, all through an endless stream of tears and fear and sadness. A perinatologist who gave us no hope. A pediatric cardiologist, and then another and another, who gave us the ray of light that we needed to hang on.

In medical terms, tricuspid atresia. A single ventricle heart defect, a hypoplastic right heart syndrome. In human terms, a life lived with half a heart. But a life worth living, in every way, if we could accept the challenge and fight for our baby. And so we did.

Corey had his first surgery before he was a month old – the Blalock-Taussig Shunt. The second surgery came at less than six months of age – the Glenn. And finally, the three-stage reconstruction was completed with the Fontan when he was just four years old.

Today Corey has completed third grade. He’s the teacher’s pet. He’s an A student. He plays baseball. Everyone loves this beautiful child who fought his way into the world and then fought his way into all of our hearts.

I don’t know what the future will bring. Tomorrow is a promise to no one. But I do know that every single moment I have had with this amazing little person has been a gift. The present is bright, and I have every reason to hope that the future will be too.

I am not a doctor, and this story is not meant to offer medical advice. Only medical professionals can provide medical advice. But I have lived this story, and these pages offer a firsthand glimpse into the life of a child with CHD, including everything that I have learned along the way. This is the book I wanted when we discovered Corey’s defect. It is a road map of our journey through the world of CHD.

This is Corey’s story. Through it perhaps you can find hope for the child in your life who battles congenital heart defects too. And maybe some small comfort in knowing that you are not alone.

The Sochi Olympics are in full swing, which got me thinking about athletes with CHD. Everyone in the world of CHD is probably aware of Shaun White, but there are some other noteworthy people who’ve managed to become athletes despite their special hearts. For example, I met Brian Roberts, major league baseball player for the Baltimore Orioles, when he was part of an event for children with CHD. He’s a classy and inspirational guy. Here is a list of 10 athletes with various defects, including Olympians.

When I decided to search for a literary agent in lieu of directly contacting small publishers, I considered just playing the numbers game and blasting query letters out to everyone and their Aunt Sally. If you throw enough stuff at the wall, something will stick, right? Then I changed my mind. I’ve been doing a lot of that lately. Instead, I decided to refine my search for agents down to a group that (I thought) was more likely to be interested in my work. The agents that I’ve been in contact with so far have been really classy, and I appreciate that so much, because I know how wildly busy they are. The number of submissions received daily by agents is astounding, so I am grateful for any feedback they have to offer.

One agent told me that she was sorry she wasn’t the right fit for me, as she only represents children’s books. That was my mistake – I’m not sure how I got from “the books she represents remind me of Where the Wild Things Are” to “hey she’ll love a book about CHD!” She said she understands the importance of my work on a personal level, as her nephew has CHD. That was good to hear.

But I have some good news! An agency that I am very excited about asked me to allow them a three week period to evaluate my proposal and sample chapters exclusively. I happily granted that, and now it’s time to wait and hope that they see the importance of this book. And not because I’m so fabulous, but because Corey’s story of hope is one that needs to be heard.

In the meantime, I’ve settled on this as an author photo for the day when the book is finally published.

This weekend we went to visit my college roommate (Sonja) and her family. She has three little boys, all under the age of seven. We have two little boys. In this scenario, 3+2 = Crazyville. To be fair, the boys were all really good. It’s just that each child individually possesses a massive amount of energy coupled with the brains to cause all sorts of wicked trouble. Put all five of them together and the destructive power rivals the Tasmanian Devil’s. They’re all wicked cute, though. And they know it. And thus we do not sell them on eBay, but instead we laugh and quote their zaniness.

Here’s the latest top 10 list, courtesy of Sonja. These are all things she’s actually said. Except one – I made one up. See if you can figure out which one.

Top 10 Things a Mommy Never Thought She’d Have to Say

10. “Get the shark out of the refrigerator!”

9. “How did poo get on the wall?!”

8. “Hold still – I have to cut the helicopter out of your hair.”

7. “Stop rubbing the carrot on your foot!”

6. “Please EAT your piece of chocolate. It is not a crayon.”

5. “No, I’m not going to help you put the sunglasses up your pants.”

4. “No, guys, don’t pee on that bush, pee on the other one!”

3. “Don’t forget to take the pizza out of your pocket before bath time.”